It’s been about a month or more since I started weaning myself off of Ativan and I have gone down from 2mg to 1mg and now I’m working on getting down to .5mg. It hasn’t been easy but my pharmacist has been great at coming up with a slow-taper program for me.
Going from 1mg t0 .5 has been the hardest. I don’t know why but it’s been really brutal. I have lots of extra anxiety, bad nights sleeps which make me exhausted during the day, full body tremors while I sleep that make me wake up terrified.
I also have claw hands. Maybe not their official term but that’s what I call them.
If I lay still for an hour or more (like when I nap or sleep) I wake up and my hands are like stiff claws. I can’t move my fingers and they feel paralyzed. I have to slowly wiggle them and after a few minutes they warm up and I am able to use them again.
Same with my feet. I have to be careful when I get up because I lose my balance and they don’t work well until they warm up. My feet are sore all the time and you know it’s bad because I’ve only been wear my running shoes and none of my other shoes. Ha ha.
I think it’s either left-over from the Tamoxifen or perhaps from the chemo. Either way it’s uncomfortable. I’ve spoken to my naturopath and he has me taking a myriad of things to help. I have a meeting with my Oncologist in a few weeks.
She doesn’t understand why I’m still in pain. I keep telling her I’m sensitive to medications. You’d think after dealing with me all year and all my reactions to medications that she’d start to understand.
So I’ve been dealing with “claw hands” as well as all the side effects of getting off of Ativan but I’m happy to say that as of this week I am almost at .5mg. It’s been rough but I feel good about getting off it it.
I’ve been very gentle with myself lately. I am only doing things that make me feel good. Yoga. Swimming. Hanging out with Fergus and Gerry.
I’ve been doing to Physio once a week to get my arm back in shape. I go for MLD massage every two weeks to help with the Lymphedema in my arm. I am taking part in a study at the Cancer Center about Restorative Yoga and fatigue.
I was taking part in a study about Stress, PTSD and cancer treatment but I had to bow out after 2 sessions. I am too sensitive right now … hearing other woman’s stories about their treatment was so difficult. I could feel myself taking on their trauma and I was having nightmares and coming home sobbing. I decided it wasn’t the right time yet to work on this.
I’m reducing the Ativan. I’m working on my fitness. I’m doing deep exhausting work on my arm. That’s enough for now. I only want to fill the rest of my time with things that bring me joy.
So I hopped a plane and went to Toronto!! WHAT?
I talked to one of the nurses at the Cancer Center and talked to her about whether or not I was healthy enough to fly. She was like “You’re not in active treatment. Get out of here. Go.”
I was REALLY nervous. Other then a few minor trips to Vancouver to see family I haven’t been away from home in 1.5 years. I hear it all the time from my ladies in all my cancer groups. Everyone is afraid to leave home. Cancer treatments makes your world-view really small. I go from my house to the Cancer Center and a few errands around town. I haven’t felt like I could travel anywhere because I was afraid something would happen to me.
I was laying in bed one afternoon when I got a text from my best-besty in Toronto and my heart was aching to see her. So when Gerry got home from work we looked to see if we had enough points for me to fly out and we did. I booked it that night and left the next week.
Spending time with my Toronto friends was the tonic I needed. It was so great to go and just be me. Not be a cancer patient. Just be me. JUST ME! Oh god it was lovely.
I really only saw Shoshana (and family) and Jen (and family). No offence to anyone that I didn’t get a chance to see but this trip was a baby-step for me and I needed to keep it super mellow.
And of course we ate our faces off!
Jen and I devoured donuts from TBC Vegan Bakery. I actually danced a jig after I ate my donut.
We went to Hot Beans and had a Macaroni and #Vegan cheese with potato burrito. I fell into a food coma immediately. It was so good.
We also went to Grasslands for brunch and I had Snickerdoodle French Toast.
And of course I went to Bunners for Cinnamon Buns. I put a bite in my mouth and yelled “CINNAMON BUN” and then teared up with joy. I think my tastebuds are coming back.
Also went to FRESH and ate my face off.
But this wasn’t just in one day… This was spread out over a week. ha ha. Judging from my chin rolls – I’m pretty sure I gained 10lbs.
We also hung out in Shoshana’s kitchen a lot. That’s where we always seem to spend the most time. Hanging out with her is always amazing because we’ve known each other for over 40 years so it’s kind of like we’re speaking another language sometimes.
She just “gets me”. How precious is it to have that in your life? It’s wonderful.
One night we had a “make your own sushi” party. I found a sushi rice cube maker for her son Henry and we had a gay old time sitting outside on the deck making sushi.
Oh yeah! I also got to see The Monkey Bunch perform at an elementary school fundraiser. It was so fun.
My last day in Toronto I had a mini-meltdown. I was explaining to Shoshana and Mo about my upcoming visit with the oncologist and that we’re trying to decide what to do next. Do I continue trying different medications (that help reduce my risk of recurrence) or just stop because they all have the side-effect of joint pain and we know that the chemo made me flare up and the Tamoxifen almost killed me.
It’s a really tough, scary decision to make. I want to feel like I’ve done everything I can to make sure I don’t have a recurrence … but I also don’t want to put my body through any more trauma. I cut out the cancer. I poisoned it with chemo. I radiated it with radiation and then I took Tamoxifen and everything fell apart.
It’s a big decision. It’s scary to say no to something they recommend and it weighs heavy in my heart. It was good to talk about it with them …
Then I flew home and got my face tattoo’d. Ha ha.
Sometimes the smallest tattoo makes you feel like a superstar. It was a fantastic trip. It gave me some of my mojo back. I’m so happy I went.
OH YEAH! I almost forgot … when you have Lymphedema and you fly/travel/drag a suitcase behind you – you have to be careful because it can cause more swelling in your arm. I wore my beautiful Music City compression sleeve and gauntlet that I got from Lymphedivas.
It makes me want to get my hands tattoo’d. Uh oh … 😉